Patients' Adaptations After Acute Respiratory Distress Syndrome: A Qualitative Study.

BACKGROUND: Many patients confront physical, cognitive, and emotional problems after acute respiratory distress syndrome (ARDS). No proven therapies for these problems exist, and many patients manage new disability and recovery with little formal support. Eliciting patients' adaptations to these problems after hospitalization may identify opportunities to improve recovery. OBJECTIVES: To explore how patients adapt to physical, cognitive, and emotional changes related to hospitalization for ARDS. METHODS: Semistructured interviews were conducted after hospitalization in patients with ARDS who had received mechanical ventilation. This was an ancillary study to a multicenter randomized controlled trial. Consecutive surviving patients who spoke English, consented to follow-up, and had been randomized between November 12, 2017, and April 5, 2018 were interviewed 9 to 16 months after that. RESULTS: Forty-six of 79 eligible patients (58%) participated (mean [range] age, 55 [20-84] years). All patients reported using strategies to address physical, emotional, or cognitive problems after hospitalization. For physical and cognitive problems, patients reported accommodative strategies for adapting to new disabilities and recuperative strategies for recovering previous ability. For emotional issues, no clear distinction between accommodative and recuperative strategies emerged. Social support and previous familiarity with the health care system helped patients generate and use many strategies. Thirty-one of 46 patients reported at least 1 persistent problem for which they had no acceptable adaptation. CONCLUSIONS: Patients employed various strategies to manage problems after ARDS. More work is needed to identify and disseminate effective strategies to patients and their families.

Getting better or getting by?: A qualitative study of in-hospital cardiac arrest survivors long-term recovery experiences.

In the United States, approximately 292,000 adults (>18 years old) per year suffer an in-hospital cardiac arrest (IHCA). Survival rates have increased over the last decade and many survivors return to their communities. IHCA has been recognized as a unique disease entity because the arrest happens in a medical care setting and survivors often have more medical co-morbidities. Although more individuals are surviving IHCA, very little is known about their long-term recovery experiences. Semi-structured interviews with 19 IHCA survivors were conducted to better understand their recovery experiences and identify strategies of adaptation that they felt aided their recovery. Thematic analysis indicated that IHCA survivors experience ongoing challenges to recovery. Reconceptualization of independence was necessary for some participants to re-engage in social and physical activities and a few were able to engage in new activities. Our findings suggest that IHCA survivors often develop their own strategies for adaptation in order to continue participation in their social lives and that their recovery experiences are ongoing. Intervention programs and follow-up care should continuously ask survivors what is important to them and identify resources that will support their goals. Questions should include physical, cognitive, psychological and social goals that extend beyond those specifically related to IHCA since our findings indicate that the effects of IHCA are long-lasting and encompass all aspects of survivors' lives.

Financial Toxicity After Acute Respiratory Distress Syndrome: A National Qualitative Cohort Study.

OBJECTIVES: The financial burdens and subsequent related distress of medical care, referred to as financial toxicity, may limit access to beneficial treatments. However, financial toxicity after acute care is less described-and may be an important but underexplored mechanism preventing full recovery after critical illnesses such as acute respiratory distress syndrome. We sought to identify the mechanisms by which financial toxicity manifested in patients with acute respiratory distress syndrome, protective factors against such toxicity, and the consequences of financial toxicity to survivors' lives following acute respiratory distress syndrome. DESIGN: We conducted semistructured interviews following patients' hospitalization and during recovery as an ancillary study to a multicenter randomized clinical trial in acute respiratory distress syndrome. Patients were 9-16 months post randomization at the time of interview. SETTING AND PARTICIPANTS: The Reevaluation Of Systemic Early Neuromuscular Blockade trial examined the use of early neuromuscular blockade in mechanically ventilated patients with moderate/severe acute respiratory distress syndrome. We recruited consecutive surviving patients who were English speaking, consented to follow-up, and were randomized between December 11, 2017, and May 4, 2018 (n = 79) from 29 U.S. sites. MEASUREMENTS AND MAIN RESULTS: We asked about patients' perceptions of financial burden(s) that they associated with their acute respiratory distress syndrome hospitalization. Forty-six of 79 eligible acute respiratory distress syndrome survivors (58%) participated (from 22 sites); their median age was 56 (interquartile range 47-62). Thirty-one of 46 reported at least one acute respiratory distress syndrome-related financial impact. Financial toxicity manifested via medical bills, changes in insurance coverage, and loss of employment income. Respondents reported not working prior to acute respiratory distress syndrome, using Medicaid or Medicare, or, conversely, generous work benefits as factors which may have limited financial burdens. Patients reported multiple consequences of acute respiratory distress syndrome-related financial toxicity, including harms to their mental and physical health, increased reliance on others, and specific material hardships. CONCLUSIONS: Financial toxicity related to critical illness is common and may limit patients' emotional, physical, and social recovery after acute respiratory distress syndrome hospitalization for at least a year.